Connect with others who understand.

sign up log in
Resources
About MyLupusTeam

Connect with others who understand.

sign up log in
Resources
About MyLupusTeam
Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I Would Like To Read About Other Lupus Sle Warrior Experience With Uneducated Nurses And If You Had Any Bad Experiences With Them

I Would Like To Read About Other Lupus Sle Warrior Experience With Uneducated Nurses And If You Had Any Bad Experiences With Them

Has anyone had any bad experience with doctors and nurses at the hospital? Well I definitely have had plenty of bad experiences with them . I’m 44 going on 45 been diagnosed sense 2004 so you can imagine how many times I’ve had to go to the hospital. I have poor veins so usually they have to use a ultrasound machine to find my veins or the nurse really good at finding them. Well some young nurse comes in she tries to find a vein but at the same time she’s looking at the scaring on my arm so… read more

posted 6 days ago
A MyLupusTeam Member

I was officially diagnosed in 2019 but have had a lifetime of going in to get treated for the flu only to be told I'm fine 😞. Because my flares were mild for so long I was treated like a hypochondriac and just some young kid who didn't want to work.

Now I've gone through a major flare and have finally been diagnosed. I started crying because I understood this was an incurable life long battle and I was feeling really ill at the time. My Dr. had no bedside manner or compassion and point blank asked why I was crying 😭. It was in a really uncompassionate manner.

I saw her for over a year. She is the only Rheumatologist near me, I tried going to another city Dr. but it was just so hard to go so far away. I'm back with her and she's really toxic. Gaslighting, passive aggressive, pushy with medications etc. I'm miserable.

I have developed a team of other Dr.'s who can provide treatment along side her and I frequently ask for second opinions as well as ask a lot of questions regarding my treatments and side effects. I don't think she's used to a patient who advocates for themselves and is actively involved in every aspect. I'm interested in the whole package. Treating the underlying condition through education, lifestyle changes, diet, supplements and Rx.

I'm very sensitive to medications and some have actually caused renal damage: she gaslit me and told me it was my Lupus. Upon a second opinions from a nephrologist, other Dr. 's and pharmacists on my team, I decided to stop the chemo treatment she was prescribing. My kidney failure is now gone.

I'm tired of the medical and government communities dismissing my own personal input as if I have no qualifications to advocate in my treatments. I'm tired of being treated as if I don't know what my own body is experiencing.

I'm grateful for my ND and my local nurses because they have shown me the most respect and compassion during my diagnosis and treatment. They keep me going.

I'm so exhausted and sick of the condescending Dr and her gaslighting.

posted 6 days ago
A MyLupusTeam Member

I have a good team of doctors now. But have had so many issues with Emergency Rooms. I had food poisoning for 6 weeks (yes you read that right I have Crohns as well so by symptoms were not usual) the emergency room offered me pain meds … I went to 5 different doctors. Finally I was able to see my GI doctor who did a simple test and 3 pills later that was better. (Meanwhile I had lost 40 pounds and have felt like crud ever since. Hello Lupus.. I haven’t felt ok since.

posted 5 days ago
A MyLupusTeam Member

The most difficult thing is when you feel like you’re not being taken seriously and you feel like you have to educate the medical staff

posted 6 days ago
A MyLupusTeam Member

I hear you. Same thing here. I was having seizures and nobody in the state had epilepsy monitoring unit. They put me on seizure meds. Fast forward a few years and they have the equipment. However I wasnt seizuring anymore at least didnt in unit. They said I was having convergence physiological issues and was having pseudoseizures. Then the teaching hospital doctor patient dropped me. Now years later doctors are saying i should have had spinal fluid analyzed back then and nothing was done but MRI. So we have to wait and watch for returning neurological involvement. Right now its busy attacking other organs. No one doubts me now. Still undiagnosed though.

posted 6 days ago
A MyLupusTeam Member

Yip
I guess thats why i hate doctors

posted 6 days ago

Related content

View all
Exercise
A MyLupusTeam Member asked a question 💭
Getting A Diagnosis
A MyLupusTeam Member asked a question 💭
Pregnant
A MyLupusTeam Member asked a question 💭
Already a Member? Log in